Consumer health engagement; involving patients and families; shared decision-making.
These are some of the stated aspirations of the Partnership for Patients, the public-private partnership for improved healthcare quality and safety announced by the Centers for Medicare and Medicaid Services (CMS). The words are hopeful, but the devil is in the details. How do we move the needle on this most important component of a successful health outcome: the patient’s sense of control over their own health? A regional collaborative in southeastern Pennsylvania is working on some of the answers.
Unfortunately, our health delivery processes often function most efficiently when the patient is in a passive mode. Largely due to the economic underpinnings of our healthcare system, high value is placed on standardized, efficient and speedy delivery of care. Dutiful patients who show up on time, wait patiently, sign consent forms without question, and gratefully accept the intrusions of treatment without complaint can provide a respite to busy clinicians working through a high patient workload. By contrast, assertive patients who ask multiple questions, make special requests, and involve demanding family members in their care and decision-making are often considered difficult customers that bog down an otherwise efficient routine. But healthcare providers must begin to recognize that the activated patient should be nurtured and encouraged, however disruptive to our idealized care processes.
The need to do things differently at the bedside is best demonstrated when thinking about how clinicians and patients communicate. Every nurse and doctor I’ve ever met would grade themselves an “A” in their interactions with patients. And truly, they are expert in concise didactic explanations, and can express complex medical information in a respectful and sensitive manner. But even with the best of intentions, this approach has inherent flaws. The clinician’s articulation is just the start; the hallmark of successful communication is direct confirmation from the patient that learning and understanding have been achieved. Such feedback is rare, in part due to the fact that, according to many studies, a normal individual’s capacity to listen to and absorb verbal information is seriously compromised when the person is under stress, which is typically the case in a medical setting.
This finding has serious implications for hospitals. During hospitalization, people are dealing with feelings of illness and pain, the anxiety of being way from home and loved ones, the lack of control over their circumstances and surroundings, and fear of unknown outcomes (or even death). No matter how clearly explained or written down, complicated medical terms and instructions may not make a lasting impression, or may even be dangerously misheard. It is almost remarkable that so many patients and families can persevere through these barriers to have a good outcome! For 1 out of 5 patients being discharged from the hospital, a breakdown in understanding and/or follow-through occurs, and they are back in a hospital bed within 30 days of their original discharge (Jencks 2009). The failures of our system by which patients with a chronic disease are not able to self-manage their care can cause a recurring cycle of multiple admissions within a single year, creating a tremendous burden on our health system resources and our ability to pay for them.
Improved patient activation is one of the goals of the Preventing AVoidable Episodes (PAVE) Project, a collaboration among 28 Philadelphia-area hospitals, long-term care facilities, home care agencies and community-based organizations. Initiated in 2010, the PAVE Project addresses the need to improve care transitions and reduce hospital readmissions. PAVE is funded by the Partnership for Patient Care, a multi-year quality and safety initiative supported by Independence Blue Cross and the region’s hospitals, and managed by the Health Care Improvement Foundation. The PAVE participants are working to integrate several cultural changes in their organizations:
- The concept of a hospital “discharge” (implying a release of responsibility) needs to give way to a concept of “transition.” Hospital staff should retain an obligation for the patient’s healthcare until they are safely delivered to the next provider of care, be it the physician’s office, the home care provider, or even a family caregiver. It is not a hand-off but a “hand-over,” a subtle distinction that represents the shared responsibility for the patient’s well-being borne by every provider in the system.
- Traditionally, patients leaving the hospital were asked to manage their conditions at home based on a hastily scribbled set of instructions on their way out the exit. Hospitals are now doing a better job, starting long before the day of discharge, to assure that patients understand their medical condition and what to expect once they get home. A very effective practice is the Teach Back technique, which involves a scripted interaction asking that patients repeat back, in their own words, the instructions that were conveyed from the clinician. Multiple repetitions or variations may be needed before the patient can demonstrate a good sense of understanding. By expressing it in their own words, the patient takes ownership and control of the information.
- Besides the lack of understanding, patients can also be overwhelmed by the sheer volume and technical nature of the self-care directions they received. Hospitals are now assuming responsibility to provide patients and families with the right level of support, be it a calendar or organizer to help with a complex new medication schedule, or assistance with medical appointments within their first week home from the hospital. Mary Naylor and her colleagues at the University of Pennsylvania have successfully shown that intensive support of chronically ill patients, including home visits, can be very effective in improving patients’ health status and reducing overall hospitalization (Naylor 2004).
In a time of scarce resources, it is important to target the right level of support to patients who need it most. Seven PAVE organizations have signed on to pilot the Patient Activation Measure® (PAM®), a 13-question survey that assesses consumers’ knowledge, skills and confidence essential to managing their own health and healthcare (Hibbard 2004). The PAM assessment segments consumers into 4 progressively higher activation levels. Each level addresses a broad array of self-care behaviors and offers deep insight into the characteristics that drive health activation. A PAM score can also be used to predict healthcare outcomes including medication adherence, ER utilization and hospitalization. PAM was developed by researchers at the University of Oregon and has become recognized as an objective way to evaluate patients’ progress across the different levels of activation.
Over a 3-month period beginning in July 2011, patients cared for at the participating organizations with a diagnosis of heart failure will be asked to take the PAM survey. Scores and activation levels will be noted and used to assist the providers in their approach to patient education. The incorporation of Teach Back is highly recommended. The same patients will be followed post-discharge, and the PAM survey will be re-taken by the patients at designated intervals to determine if they have progressed to a higher level of activation, suggesting that targeted approaches have been successful.
PAM also offers tools and resources for clinicians to assist in implementation, such as online coaching resources, care maps and personal health record templates. The PAM tool can be used in all settings, from hospital to ambulatory care site to doctor’s office. Participants will track PAM scores periodically over time to assess success in moving patients to higher levels of activation. In addition, metrics such as hospitalization rates, medication adherence and weight management will be collected to confirm that patients’ self-assessments align with improved behaviors.
A key challenge for our regional health system will be identifying and implementing sustainable changes by which patients can become true partners in managing their health. Tools like PAM, along with the best practices emerging from the PAVE collaborative, hold great promise for transforming the ways providers and patients interact. The goal is a more activated patient who is capable, confident and empowered to manage his or her own care.
Kate Flynn, FACHE, is President of the Health Care Improvement Foundation, a Philadelphia-based nonprofit organization dedicated to building partnerships for better care in southeastern Pennsylvania.
Hibbard, J.H., J. Stockard, E.R. Mahoney and M. Tusler. (2004). Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers. Health Services Research 39:1005–26.
Jencks, S.F., M.V Williams and E.A. Coleman. (2009). Rehospitalizations among patients in the Medicare fee-for-service program. New England Journal of Medicine 360(14):1418-1428.
Naylor, M.D., D.A. Brooten, R.L. Campbell, G. Maislin, K.M. McCauley, and J.S. Schwartz. (2004). Transitional care of older adults hospitalized with heart failure: A randomized, controlled trial. Journal of the American Geriatrics Society 52(5):675-684.